Should Individuals who Donate their DNA and Other Biological Samples to Research Have Control Over How their Samples are Used?

An article dated, October 10, 2016, explained the growing “biorights” movement and the issues that arise when individuals refuse to donate their biological samples for free and/or demand control over how researchers can use their samples. Much of this controversy stems from the case of Henrietta Lacks, whose cells were taken without her consent or compensation and were used for decades in research that resulted in major medical discoveries. Many individuals believe they have a right to control their biological samples even after they are donated. However, researchers are concerned that this biorights movement will hinder medical advances by reducing the availability of samples they need to conduct research that can potentially make vast impacts on public health and welfare.

From the Boston Globe, “‘Biorights’ Rise: Donors Demand Control of Their Samples”

Excerpt from article:

No longer are patients or donors like O’Connor remaining passive when it comes to providing blood, saliva, or tissue samples used for research — samples that are used to help researchers find treatments that can earn drug makers millions, or even billions, of dollars.

Disclaimer

The pieces here represent the position and analysis of the individual authors and not those of the Hofstra Bioethics Center or The Gitenstein Institute for Health Law & Policy. Each author is responsible for the accuracy of the citations and substance of the text itself.